Negative publicity on PWME - the motive?

A fine sentiment and we can all picture ourselves astride some barricade heroically wielding a flag emblazoned with the word 'truth'. But 'truth' is unfortunately rarely a simple and easily definable 'thing'. Questions such as 'Whose truth ?' , 'Matters to whom ?' and 'Tested how ?' all arise when the audience for some explication of 'a truth' is hetergengous, is possessed of multiple competing perspectives and shares no central binding philosophy or community of interest.

Truth, as opposed to 'honesty (which we might define as truth about onself), is rarely a useful starting point if one wants to influence others. Human beings are far more likely accept a nuanced and gradualist introduction to an alternate view though of course Pauline convertions do happen, but they invariably produce zeolots whose contributions lead to the ossification of divisions rather than any breakdown of barriers. Truth tends to demand that someone is 'right' and someone else is wrong - the situation is instantly oppositional and the someone who the 'truth' demands must be 'wrong', has nowhere to go other than either concede defeat or contest the 'truth'. Even if one is in a 'winning' position, it may not be beneficial to create a situation where someone becomes, or is maintained as, an enemy. Giving the 'opposition' an 'out' is often by far the most effective way of reducing opposition, long term. This is especially the case where one is 'fighting' from a position of 'weakness', because one's chances of total victory are very small; an honourable truce, although it may be far less emotionally satisfying, may be by far the best outcome.

IVI

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That's like saying I can't measure an inch.

My response is:
I know I can't measure an inch absolutely, but I can get to within a reasonable tolerance range.

How close can I get to measuring an inch? Give me some gage blocks, a granite block, and a height gage and I can get you to within +/-.0002" all day long.

Lets keep it simple.

The truth is being factually and historically accurate as reasonably possible given the tools at our disposal. The antitheses of deception. Honesty.

The truth is pure and excludes manufactured consensus, psychological parsing of words, retraction, the elephant in the room, and ALL other man-made artificial constraints.

One of the issues in philosophy is that, aside from things that are defined true artificially, it is very hard to be sure you have the truth. The entire movement behind philsophy of science is about this. We can only do so much. We can only verify so much. We can only test to a limited extent. If something fits the facts, if it survives strenuous criticism, its a tentative truth. That has to be enough until something comes along to change our viewpoint - new facts or a new test.

I read facts in the newspapers a lot. Are they all true?

Its a fact that at one point the average family was 2.3 people, irrc. Thats a mathematic abstraction.

I like pancritical rationalism in part because it is not really about truth. Its about questioning. If something survives every challenge, its at least robust, but that doesnt make it true. If there is a reason its always possible to question it some more.

With respect to finding out why a lot of this negative publicity and psychobabble are claimed, that is always going to be problematic. Its not that it cant be done, but it requires something like a judicial review, with powers to investigate and question people. Its not going to be demonstrated with any amount of external analysis. It will require a whistleblower, a paper trail, or a formal enquiry. None of these things are likely to occur.

When something is counter-factual however, you can cite evidence that it is wrong. I also think it might be possible to demonstrate ethical violations - but I am not ready to discuss that and might not be for a long time.

I'm sure glad I didn't get sick in Britain. There is a certain vein of UK medicine that is deeply cynical and hostile towards patients. Especially the psychiatrists. I'm sure there are many kind, understanding physicians in the UK, but they appear to swim in a tide of cynicism and callousness. Don't know if was something that started in the lean, hungry years following WWII, when the NHS was founded. The medical profession there is so damned grudging about anything that isn't completely obvious.

Some PWCs might remember that wretch Irene Showalter, fifteen years ago, who wrote about us in a book on "mass hysteria." What a p.o.s. She's an American who lives in Britain. She spoke alarmedly about being shouted down by CFS patients during her book tour. And yes, she definitely was. Both here and abroad. But bad publicity is better than no publicity. For us and our cause, that is. And she had no business commenting on an illness about which she had no clue. She's probably pals with Wessley. Closed minds think alike.

Keeping screaming, UK patients. Don't listen to your critics! Psychiatrists are master manipulators, and you play into their hands by shutting up. Just remember what the gay community did, and how obnoxious they had to be to get the attention their disease deserved. It works! The squeaky wheel eventually gets grease.

Giving the 'opposition' an 'out' is often by far the most effective way of reducing opposition, long term. This is especially the case where one is 'fighting' from a position of 'weakness', because one's chances of total victory are very small; an honourable truce, although it may be far less emotionally satisfying, may be by far the best outcome.

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Right, this is why the emphasis should be on education and building support, rather than attacking the motives of those who are attacking us. The emphasis should neither be on attacking false sentiments (eg never say 'it is not all in our heads', because that merely begs the question).

The media tends to be grossly ignorant of the actual published science of ME or CFS and that seems to be part of the reason why they continue to publish myths.
But thousands of dilute comments from angry patients is unlikely to change this.

The fact is that the lack of progress in CFS/ME is because it is one of the most neglected areas of medical science and indeed the most neglected area when considering disease burden. The question I pose to you is how do we overcome this catch-22 - lack of progress and excitement leads to a continued lack of research and momentum.

Keeping in mind that none of the CFS researchers I have spoken to in person have had nothing but praise for the support they have received from patients.

So the DOH is aware there is a political problem around this illness. I heard that no other illness is discussed in parliament in the way ours is.
Individual illnesses are the province of the NHS and do not normally merit parliamentary discussion.
Health policy, yes, but not an individual disease.

So there is something very unusual about our case.

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IDK about other Parlaiments, but I have heard that it took a Congressional order to make multiple sclerosis be treated like an actual disease, even after the MRI. Still I agree that this is an unusual type of circumstance which ought not to happen.

I think this thread can only function if you provide specific examples of what you consider to be 'negative publicity' and not opinion pieces published on blogs designed to (as IVI said) 'poke the ants' nest'.

There are 'journalists' or people employed by e.g. newspapers whose underlying aim is to 'stir up' opinion in whatever way they can. To irritate and inflame and generate 'hits'. They thrive off of 'rants'. It is their job e.g. Rod Liddle who I understand sided most recently with the Tory Chief Whip!

If you are thinking about the media reporting relating to the PACE Trial well there you have a 'legitimate' research study reaching conclusions that were disseminated amongst the media and reported verbatim. The headlines were then 'tweaked' to sensationalise - which is primarily what particularly the 'media' thrive on.

If anyone complains then they can 'legitimately' point to their 'legitimate' source. Now, if a study was published, financed by the state, that reached another conclusion about e.g. the cause of ME or posited a new treatment that comprised some new drug; then you might see similar headlines.

The simple fact is that nothing along the lines of PACE has ever been forthcoming from any 'legitimate' e.g. government source. ME is dogged by 'expert' opinion and very little else.

What you consider to be 'negative publicity' is largely in my opinion - opinion. If you are confining your search to the likes of Liddle and Pemberton then you are too narrow. These individuals are not likely to take any time to better consider what they write on a blog designed to inflame sentiment or to attract those who share their warped and dismissive views.

Maybe you should ask what you would consider to be 'positive publicity'?

Besides generating hits, as you point out, I think the goal is to discredit ME/CFS patients in the public mind, so that if we start agitating for funding or even basic respect, no one will take us seriously. I mean, even if they thought we were mentally ill, some people might be inclined to be sympathetic, but not if they see us as snarling mad animals. Not if we're more dangerous than mobs who storm embassies and murder diplomats.

HI ixchelkali, here is an alternative view. The consequences of their claims are public distrust and bias. This is fueling prejudice. It doesn't matter what the motivation is, which is hard to prove, the consequences are much easier to demonstrate. What they are doing is achieving increased controversy at the expense of a sick and disabled patient community. Why is almost irrelevant - there is no justification for it under any reason. Bye, Alex

I think this point has started to be made and it's something I've thought for a while that the common reference to 1000s of papers on biological abnormalities, or whatever general sign is being hung around them, is a little played out. It's great to a point, but I feel like, I'm not trained, nor are many to answer the inevitable follow up question. Like I could rattle on about orthostatic intolerance, nk cells, irregular PET topologies - but it's not something I know substantial information about, and I lack the professionalism to map their relations to our disease or the human body as a whole.

I would like to see the community, a community, maybe this community to produce a condensed but substantial material that could be passed onto journalists, medics and scientists (perhaps you might have more luck with students in particular) that puts together things like, the issues with epidemiology, the biological abnormalities and their relation to other recognised diseases and of course, a good list of quotes from the best scientists working in the field of biomedical ME/CFS research.

Stukindawski's idea of putting together a concise and condensed set of material to link to or give/refer to journalists referring to specific issues, research, subject matter and expert opinion/quotes is another great idea.

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I think these are really good ideas. I got into a Twitter conversation about the nature of ME, and I was asked for evidence to demonstrate that it is a biomedical illness. The other person pointed out that if there was reliably repeatable and irrefutable evidence, then it would have been included in the NICE guidelines. Although I would never defend the NICE guidelines, I thought that the person had a point, and I struggled to 'prove' the biological nature of ME. I haven't studied the biomedical research in depth, and I don't know about its overall quality, and I couldn't point towards any specific research that would irrefutably prove my point. This may just have been ignorance on my part. I could only discuss the issues and point towards the biomedical research studies, and Margaret William's list of immunological research, and the ICC. It's also helpful to know the results of the PACE and FINE trials, and some of the CBT review papers.

So, a pre-prepared resource would be really helpful. I'm certain that we could come up with something of excellent quality between us on PR. It's just the work involved which is a bit daunting.

I think these are really good ideas. I got into a Twitter conversation about the nature of ME, and I was asked for evidence to demonstrate that it is a biomedical illness. The other person pointed out that if there was reliably repeatable and irrefutable evidence, then it would have been included in the NICE guidelines. Although I would never defend the NICE guidelines, I thought that the person had a point, and I struggled to 'prove' the biological nature of ME. I haven't studied the biomedical research in depth, and I don't know about its overall quality, and I couldn't point towards any specific research that would irrefutably prove my point. This may just have been ignorance on my part. I could only discuss the issues and point towards the biomedical research studies, and Margaret William's list of immunological research, and the ICC. It's also helpful to know the results of the PACE and FINE trials, and some of the CBT review papers.

So, a pre-prepared resource would be really helpful. I'm certain that we could come up with something of excellent quality between us on PR. It's just the work involved which is a bit daunting.

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The NICE guidelines only really look at diagnostic and treatment options rather than the cause of the disease. Even though we dislike the guidelines around CBT/GET I seem to remember that they talk about them being management strategies rather than treatments or cures.

I think we should acknowledge that the cause of ME is unknown and talk about the different theories, being able to point to key pieces of evidence for (and against) different theories. The real/psychological/physical debate isn't helpful as it keeps the focus on the wrong (and somewhat undefined) question. We should be more accurate and talk about immune disfunction/mitrocondrial/neurological/malformed illness behaviour/persistant infection theories. Whilst we allow people space for innacuracy the debate is hard.

So how would we go about doing this. One suggestion is that we set up a PR group to develop and discuss a document. The first stage would be to throw around ideas for a structure (what should be included) along with ideas around important peices of evidence. Many people here know lots of different pieces of the literature so if we can get lots of people to contribute it becomes a possibility.

And yes, consider CBT and GET if you like. All those who comment that these two therapies are in various ways detrimental to our recovery - you have to ask if a) they have ever engaged in either or both therapies themselves, and b) why they do not accept that some of their fellow diagnosees have felt them to have been of benefit.

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Hi Firestormm,

Your comments raise so many issues, that I'm not sure where to begin.

The problem stems with CBT and GET being used on the basis that ME is psychological in origin.

This is a problem for a few reasons: Firstly, misplaced claims, about the efficacy of CBT and GET, misleadingly support the theory that ME is psychological in origin. Secondly, it is damaging to patients to make claims that ME is psychological in nature. Thirdly, refusal to take part in these therapies can be used to confirm a psychiatric diagnosis. It is simply misleading to claim that CBT and GET are successful treatments.

So there are so many issues tied up with the use of CBT and GET for ME. It is not a simple case of the therapies being helpful for some patients and not for others.

If they were used and promoted honestly, simply as tools to help us cope with living with a chronic illness, then I don't think many of us would have quite the same problems with them.

But also, it is down to our personal experiences. When we first get ill, many of us respond violently and negatively to exercise (i.e. post exertional malaise.) So we learn to pace ourselves, and to decrease our activities. We are then told that we are ill because we aren't exercising enough, and we are prescribed exercise. Well, obviously, this is utterly perverse, and totally lacks insight into our illness and experiences.

Most of us were very active before we became ill, and we discovered that ME reacts negatively to exercise, and so we learned to reduce our activity levels in order to reduce and manage our symptoms. So, many of us aren't going to accept GET as a therapy, under any conditions. In MEA and AfME surveys, many patients have reported being harmed by GET in clinical settings. This is not difficult to imagine, considering the nature of ME, the ignorance of therapists surrounding the nature of ME, and our personal reactions to activity.

Also, in clinical settings, therapists might not understand how GET should be implemented for safety, or the nature of ME, enough to understand that GET should be implemented carefully and incrementally, and that symptoms should be monitored careful. Not that GET is effective anyway. Even in the best research setting (the PACE and FINE trials), GET was shown to be almost useless. And the 'deterioration rates' for the PACE Trial have not yet been released, so we cannot compare patients' anecdotal experiences of harm with the evidence, conveniently.

It also doesn't help when patients are accused of not wanting to get better because they refuse to participant in GET. The medical staff, who make the accusations, don't understand how ineffective GET is, they don't understand how GET should be implemented, they don't understand the nature of ME, and they don't understand our personal experiences.

ME is an immunological and neurological illness, so it seems quite ridiculous that CBT and GET could have any success in actually treating the disease, as they are psychological therapies.

To suggest that CBT and GET are effective, is an issue for all of us, because it lends credibility to the claims that ME is a psychiatric illness, and it leads to research funding being given to psychiatric research, which as been a big problem for us over the past few years.

I acknowledge that some people might have experienced at least subjective benefit from CBT and GET, but it should be noted that the improvements seen in both in the PACE Trial were no more than the improvements as a result of 'relaxation' seen in another study by Peter White (although I haven't quite worked out how to take account of the control groups in this study.) In any case, CBT and GET made almost no difference in the PACE Trial. A maximum average of 13% of patients responded to treatment, by the tiny amount that was considered to be a clinical response. Patients were left severely disabled a year after treatment. In the FINE trial, CBT and GET were both found to be useless.

CBT and GET do not treat ME, but there are many reasons why patients might experience benefit from both, such as:
1. Placebo effect.
2. Natural fluctuations in symptoms over time, that coincide with the therapy.
3. Patients who embark on GET might have already improved to a point where they feel ready to embark on a motivational course.
4. Patients find motivational techniques helpful.
5. Patients with psychological illnesses may have been misdiagnosed. (It has been shown that there is a 40% misdiagnosis rate for ME.)
6. Patients may be reporting their optimism, rather than actual outcomes.
7. Patients may feel subjective improvements, but there maybe no objective improvements.

Right, this is why the emphasis should be on education and building support, rather than attacking the motives of those who are attacking us. The emphasis should neither be on attacking false sentiments (eg never say 'it is not all in our heads', because that merely begs the question). The media tends to be grossly ignorant of the actual published science of ME or CFS and that seems to be part of the reason why they continue to publish myths. But thousands of dilute comments from angry patients is unlikely to change this.

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Exactly, although I would argue that 'the media' is frequently 'deliberately ignorant' in that the commanding commercial paradigm is strongly against 'authorititive defence' of any position, and that relativism, both moral and (for desperate want of a better phrase ) epistomological, is the most prductive means of retaining purchaser loyality. Commentators and 'columnists' outnumber named jouranlists in large swathes of the print media, and their product is sellable not on the conveyance of knowledge or accuracy but on 'contravertionalism'.

The fact is that the lack of progress in CFS/ME is because it is one of the most neglected areas of medical science and indeed the most neglected area when considering disease burden. The question I pose to you is how do we overcome this catch-22 - lack of progress and excitement leads to a continued lack of research and momentum.Keeping in mind that none of the CFS researchers I have spoken to in person have had nothing but praise for the support they have received from patients.

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I'm not so confident about arriving at a definitive explaination of why M.E/CFS has ben 'neglected'. Science, and especially medical science has historically proceeded chaotically, mediated by social and cultural influences, economic conditions and the overall back ground of scientific and technological development. I'm unwilling to simply put aside the fact that M.E/CFS is a very challenging area of ill health to investigate, and rather than concentrate on why there has not been progress to date, my inclination is to look at recent scientific and technological developments as the opportunity for a 'natural' step change in the commitment of resources to invesigate M.E/CFS.

So to answer your question in very limited terms - (a full answer would be book sized): positive engagement across a broad spectrum (not just those with existing CFS connection) with politicians, administrators and researchers commending the opprtunities that developments in health, science and technology offer to actually resolve M.E/CFS. I wouldn't concentrate on 'excitement' (though I think I know waht you mean) but rather something (albeit good humoured) Churchillian - the idea of a 'long war' that's going to demand firm and sustained commitment is, IMO a likely more effective atomosphere to seek to create, because it subtly demands that others get involved for the 'long haul' rather than merely whambam one off research. My prescription would be for the 'message' to be inherently positive - certainly avoiding the dead end argument of "M.E/CFS is not (add here psych, faking etc) " is essential to move things forward.

So to answer your question in very limited terms - (a full answer would be book sized): positive engagement across a broad spectrum (not just those with existing CFS connection) with politicians, administrators and researchers commending the opprtunities that developments in health, science and technology offer to actually resolve M.E/CFS. I wouldn't concentrate on 'excitement' (though I think I know waht you mean) but rather something (albeit good humoured) Churchillian - the idea of a 'long war' that's going to demand firm and sustained commitment is, IMO a likely more effective atomosphere to seek to create, because it subtly demands that others get involved for the 'long haul' rather than merely whambam one off research. My prescription would be for the 'message' to be inherently positive - certainly avoiding the dead end argument of "M.E/CFS is not (add here psych, faking etc) " is essential to move things forward.

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The real question is how to build this support. Keeping in mind that there have been people who have been trying to do just that for over 20 years without much success.

I think these are really good ideas. I got into a Twitter conversation about the nature of ME, and I was asked for evidence to demonstrate that it is a biomedical illness. The other person pointed out that if there was reliably repeatable and irrefutable evidence, then it would have been included in the NICE guidelines. Although I would never defend the NICE guidelines, I thought that the person had a point, and I struggled to 'prove' the biological nature of ME. I haven't studied the biomedical research in depth, and I don't know about its overall quality, and I couldn't point towards any specific research that would irrefutably prove my point. This may just have been ignorance on my part. I could only discuss the issues and point towards the biomedical research studies, and Margaret William's list of immunological research, and the ICC. It's also helpful to know the results of the PACE and FINE trials, and some of the CBT review papers.

So, a pre-prepared resource would be really helpful. I'm certain that we could come up with something of excellent quality between us on PR. It's just the work involved which is a bit daunting.

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Bob, the new ICC Primer that you posted a few days ago (thank you for posting this!) highlights biomarkers and biological tests in 2 places that I could see so far:

On page 20 "Other Considerations " has a section "Medical Documentation". The 2nd item on the list is "Biomarkers & tests". It lists:

Besides generating hits, as you point out, I think the goal is to discredit ME/CFS patients in the public mind, so that if we start agitating for funding or even basic respect, no one will take us seriously. I mean, even if they thought we were mentally ill, some people might be inclined to be sympathetic, but not if they see us as snarling mad animals. Not if we're more dangerous than mobs who storm embassies and murder diplomats.

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Morning,

Yeah as I said I think you really have to set aside 'opinion pieces'. Personally that headline whilst initially causing me to rapidly lose gravity in my stomach area - it was because I though 'What the hell have they done now?' rather than any concern I have about the way in which me or my condition was being presented.

I think one of the first comments beneath the Thompson piece, ran something like:

"Ok, Thompson, you publish cartoons of the prophet and I'll do the same for people with ME, and we'll see who lives longest"

Now this sentiment might be representative of the ridiculous nature of his headline quote, but focusing on that headline and reading into it that ALL people including me with this condition are somehow comparable by their 'activities' to Muslim fundamentalists - ney, worse than - was missing the point or rather points.

When PACE was published I do recall saying repeatedly at the time; that it was the HEADLINE sensation that caused more concern that the content of any of the articles. If I recall correctly:

"Cure your ME - GET out and exercise!"

Of course such headlines and indeed those articles that did indeed follow this meme were inciteful and I did indeed become embroiled in the complaints and comments that followed: because they misrepresented the research itself as well as the condition as I PERSONALLY understand it i.e. how I have been personally affected.

Again I strongly suspect that any 'negative publicity' is a personal matter. What you or I might regard as 'negative' or perhaps more importantly, worthy of our time in responding - is a matter of our own opinion.

Generally speaking, something in say THE SUN or THE DAILY MAIL wouldn't even reach my conscious radar unless posted somewhere by someone else. So I think the source of any publicity matters as does the source being used for the information it contains of course.

As ever though, 'we' cannot control what is said in the media. Best I can hope for is that they attempt to represent 'both sides' of any argument and cite 'real-life' examples whose experience reflects my own but I have to appreciate that generally speaking we are all different and the same is true of the experiences of someone with Multiple Sclerosis or anything else that is considered a long term condition.

Although the OP was talking about 'negative' media representation - another source of irritant in our 'community' often stems of the reported experiences of our fellow diagnosees. And when I see some of the reaction to them - well I am sometimes enraged and to a greater extent that an opinion piece.

Our condition is I believe (have always believed) is represented as a spectrum. If someone is interviewed and gets their story in the media - who are we to criticise? Or condemn? The way 'we' respond at times to the experiences of others is very unpleasant to view.

The Sun etc are used to stir up the idiots, the scuzzballs, the same kind of folk who email chain letters of stupid and often offensive crap
why?
because if you have enough morons drowning out the reality, you "win"!
that is, you prevent anything getting done, you make sure the "Public" are spoon fed their "sleepy juice" and accept the official or, unnofficial "sotto voice" line
thus, you ensure no one investiagtes ME, no one starts an outrage of mass mruder, chidl abudction, flase imprisonment, sons of bitches don't merley lose their medical lciences/respect/profit, but they go to jail.

it's how you "sweep things under the carpet", or rather, throw a wet blanket over them when they have got out from under the carpet.

Hi SilverbladeTE, I think its more insidious than that. The Sun would do this for its own reasons - controversy leads to sales, sales leads to profits, profits lead to happy owners. The reason why nobody shuts down such things is that others benefit too, but the reasons are various. Yes, for some that may include covering up failures or wrongdoing, but not for all. As a result when someone says "its this" or "its that" that causes these issues, others can say oh no, look at these examples, the argument doesn't apply here. This makes the person talking about reasons sound crazy, as in selected instances they have been disproved.

Its more about people acting toward common outcomes for different reasons in my view. If someone achieves something you like, pragmatic politics dictate you support them even if you do not identify with their reasons.

Now there is cause to be suspicious of the Murdoch chain of companies for example. Look at how news is systematically distorted. Proving a single agenda is very hard though - its easier to catch someone doing something wrong in specific instances.